Being diagnosed with any disease is scary. Like most people, you’re probably wondering, what’s going to happen now? In the case of type 1 diabetes, you’ll undoubtedly be dealing with some changes to your daily routine. But the good—and important—news is that the disease is totally manageable, as long as you stick to the program your doctor prescribes. Here’s the deal with type 1 diabetes.
We went to some of the nation’s top experts in type 1 diabetes to bring you the most up-to-date information possible.
Emily Nosova, M.D.Endocrinologist
Stelios Mantis, M.D.Pediatric Endocrinologist
Katherine Araque, M.D.Director of Endocrinology
What Is Type 1 Diabetes?
Type 1 diabetes is mostly an autoimmune disorder characterized by a high amount of sugar, known as glucose, in the blood. The reason for this is a little complex.
Normally during digestion, the food you eat is broken down into glucose (among other things), which then enters the bloodstream. In response, your pancreas releases insulin, a type of hormone that helps muscle and fat cells all over the body suck up the glucose and use it for energy. So far, so good.
But in most people with type 1 diabetes, the body’s immune system targets the insulin-producing cells in the pancreas called beta cells, attacking them as if they were bacteria or a virus.
When beta cells are damaged or destroyed, the pancreas can no longer make insulin, and sugar can’t be properly delivered to cells throughout your body. Instead, it builds up in the bloodstream, leading to a host of health issues.
People with type 1 diabetes are usually diagnosed during childhood (most commonly between ages 10 and 16). In fact, type 1 used to be called “juvenile diabetes” because it’s mostly seen in kids.
That said, about one-fourth of type 1 cases are diagnosed in adults, well into middle age. Rarely, even people in their 90s have been diagnosed after symptoms suddenly develop. Unlike some other autoimmune conditions that affect women in significantly greater numbers than men, type 1 diabetes happens equally in both genders.
Doctors don’t know exactly why some people get type 1 diabetes and others don’t. Although it can run in families, most cases occur seemingly randomly. Here are a few factors we know play some sort of role in the disease:
Genetics. Although there is no type 1 diabetes “gene,” several genes and mutations have been identified as increasing the risk of developing the disease. In particular, mutations in a class of genes related to the immune system, known as human leukocyte antigen (HLA) genes, are associated with higher risk of autoimmune conditions like type 1 diabetes.
Family history. If autoimmune conditions run in your family, that means you may be at higher risk of developing one, too. Some studies suggest that people with a sibling or parent with type 1 diabetes have a 15 times higher risk of developing the condition than someone without any family history.
Toxins and infections. Doctors believe that in many cases, a toxin or virus triggers the start of type 1 diabetes. This substance kicks the immune system into gear, which then mistakenly begins to attack the pancreas and kill off the insulin-producing beta cells.
Geography and ethnicity. Curiously, type 1 diabetes becomes more common the further away you live from the equator. People who live in Scandinavian countries have a much higher risk of being diagnosed with the disease, and Caucasian people of Northern European ancestry have a greater risk than other ethnicities.
Symptoms of Type 1 Diabetes
Having one or more of these symptoms doesn’t automatically mean you or a loved one has type 1 diabetes, but it does mean you should talk with your doctor about how you’re feeling. Possible indications of type 1 diabetes include:
Extreme thirst: When there’s too much sugar in the bloodstream, your body pulls water from surrounding tissues to try and dilute it. That makes you dehydrated and thirsty. Some people with diabetes feel like no matter how much they drink, they can’t quench their thirst.
Excessive pee: In an effort to filter out the high sugar content in your blood, your kidneys kick into gear. They dump sugar from your blood into your urine, creating more pee. In more advanced stages of the disease, damaged nerves around the bladder may cause some people to feel the urge to pee frequently, even if little or nothing comes out. They also have a higher risk of urinary tract infections (UTIs). Children may suddenly start to have accidents at night or during the day, even though they’ve been potty trained for years.
The munchies: If you’re hungry all the time, even after a good meal, it could be a sign that your muscles and other tissues of your body aren’t getting the energy—a.k.a. glucose—they need from the food you’re eating, because it’s hung up in your bloodstream. Your muscles signal your brain that they’re starving (even though you ate plenty), making you feel hungry and continuing the cycle.
Weight loss: If you are eating normally but still losing weight, it could be a sign of type 1 diabetes. Your body will break down its own fat, muscles, and other tissues in order to get the fuel it needs to function if it can’t get enough energy from glucose, leading to weight loss.
Bad breath: When your body starts breaking down fat stores or muscle tissue for fuel, it creates chemicals called ketones that sometimes cause breath to have a stale smell. It’s the same bad breath that happens to some people who go on extremely low-carb diets.
Fatigue: Type 1 diabetes can make you feel tired and weak because your brain, muscles, and other body systems aren’t getting the energy they need to work properly. Dehydration from frequent urination can make you tired, too. Listlessness and muscle weakness may also be a sign of a severe complication called ketoacidosis.
Belly pain, vomiting, fainting and confusion: Ketoacidosis, a rare but serious complication of type 1 diabetes, can cause stomach distress and feelings of lightheadedness.
How to Diagnose Type 1 Diabetes
The first step in getting a diabetes diagnosis is a blood test. If it suggests you have diabetes, your doctor will likely perform additional testing to figure out whether it is type 1. Correct diagnosis is important since treatment differs depending on type.
Blood Tests for Diabetes
A1C (or glycated hemoglobin) test. This common test measures what percentage of your red blood cells have been coated with glucose over the past two to three months. The higher your blood sugar, the higher your score. An A1C result below 5.7 is considered normal; 5.7 to 6.4 is prediabetic; 6.5 or above suggests diabetes.
Fasting blood sugar test. Blood will be drawn first thing in the morning before you eat or drink anything other than water. A result under 100 milligrams per deciliter is normal; 100 to 125 mg/dL is prediabetic; 126 mg/dL indicates diabetes. Your doctor will likely want to do the test twice before diagnosing you.
Random blood sugar test. Blood is drawn at any time of day, whether you’ve eaten recently or not. A result of 200 mg/dL means you may have diabetes.
Antibody test. To help differentiate between type 1 and type 2 diabetes, your doctor may also draw blood for an “autoantibody” test, to see if your immune system is attacking your pancreas. People with type 1 often test positive for several specific autoantibodies, while those with type 2 (or the rare monogenic diabetes) won’t.
Urine Test for Type 1 Diabetes
If your doctor suspects that you have type 1 diabetes, she may want to test your urine for ketones, chemicals your body produces when it breaks down fat for energy. The test can be done at home or in a lab or doctor’s office by peeing into a specimen cup.
Extremely high levels of ketones are a sign of ketoacidosis, a potentially fatal complication of diabetes that requires emergency treatment.
Because people with type 1 diabetes have a higher risk for other autoimmune disorders, your doctor may want to test you for autoimmune conditions such as celiac disease or Hashimoto’s thyroiditis.
Treatment for Type 1 Diabetes
All people with type 1 diabetes need to regularly check their blood glucose levels, take insulin daily, and keep a close eye on their diet—not because diet can cure or reverse type 1 diabetes (it can’t), but because large meals or those high in carbohydrates require more insulin to break down.
Checking Glucose Levels
To check your blood sugar levels, you’ll likely use a home glucose meter to poke your fingertip with a specialized lancet “pen,” then drop the blood onto a test strip in the meter. In some cases, you’ll need to do this four to 10 times a day.
Your doc might also suggest a continuous glucose monitor, where a tiny sensor is inserted under the skin of your abdomen, arm, or thigh to check glucose levels regularly. The device will alert you if levels fall too low.
All people with type 1 diabetes need to take insulin daily. Unfortunately, insulin can’t be taken as a pill because it would be broken down and digested before getting into your blood.
There are a couple of different ways insulin can be delivered to the body:
Injection: This is the most common way to take insulin. To inject the drug, you will use a syringe or “pen,” usually in your belly, upper arm, thigh, or butt.
Insulin Pump: People who need multiple injections per day or are high risk of ketoacidosis may prefer an insulin pump, which automatically delivers insulin throughout the day through a tiny catheter that’s worn on your body.
Insulin Inhaler: Some adults use inhaled insulin, a powder you breathe into your lung through an inhaler. It’s meant to be taken before every meal, but people will still need to take an injectable, longer-acting insulin.
The type of insulin you take depends on several factors, including how long it takes your body to absorb insulin; your diet and exercise habits; and your tolerance for giving yourself injections. Your doctor will help determine what’s best for you.
These are the common options:
Rapid-Acting Insulin: This medication starts to work within about 15 minutes of taking it. You’ll likely take it just before a meal to prevent blood glucose from rising. It works for two to four hours. Examples include Humalog (lispro) and Novolog (aspart).
Short-Acting Insulin: Also called “regular” insulin, this med takes about 30 minutes to kick in. You’ll take it before a meal to help lower increased levels of blood sugar when you eat. It works for three to six hours. Examples include Humulin R and Novolin R.
Intermediate-Acting Insulin: Often combined with rapid-acting insulin, this med starts working about two to four hours after taking and balances your body’s glucose levels for 12 to 18 hours. Examples include Humulin N and Novolin N (NPH).
Long-Acting and Ultra-Long-Acting Insulin: These meds can take up to six hours to reach your bloodstream. They work to maintain lower blood sugar levels for up to 36 hours. Examples include Lantus (insulin glargine) and Levemir (insulin detemir).
Although studies are still ongoing, some research suggests that adding blood-sugar-lowering medications such as metformin or a new class of drugs called SGLT2-inhibitors to usual insulin therapy could be helpful for some people with type 1. This combined treatment is still controversial.
Like any chronic disease, living with type 1 diabetes can be challenging. One of the biggest hurdles is the need to constantly be aware of your blood sugar levels and be ready to take action accordingly. Giving yourself injections takes some getting used to, but most people are able to come up with a manageable system over time.
If you are struggling to stay on top of your type 1 diabetes treatment plan, working with a certified diabetes educator (CDE) might help. These healthcare providers (often registered nurses or registered dietitians) know the ins and outs of diabetes treatment and are able to come up with systems and solutions that work in real life.
Most importantly, if you are diagnosed with type 1 diabetes, know that you are not alone. You doctor can point you to support groups, counselors, and other experts in the field to help you find ways not just to live with the disease, but to thrive.
Frequently Asked QuestionsType 1 Diabetes
How are type 1 and type 2 diabetes different?
Type 1 diabetes is an autoimmune disease that stops the pancreas from producing insulin; people with type 1 must take insulin every day. People with type 2 usually make enough insulin, but their bodies don’t use it well. It’s typically treated with diet and exercise, plus oral medications and/or insulin.
What causes type 1 diabetes?
There is no single cause of the disease, but multiple factor can increase your odds of getting it. Along with certain genetic mutations, doctors believe that there is usually a trigger—such as exposure to a toxin, or an infection by a virus—that puts the immune system on red alert. Once activated, it starts attacking the pancreas.
What are the signs of type 1 diabetes?
Classic symptoms include increased thirst and having to pee a lot. Type 1 diabetes can also cause unexplained weight loss, because your body starts to break down body fat, muscles, and other tissues in order to get the fuel it needs for your brain, heart, and other organs. That can lead to a lower number on the scale.
How is type 1 diabetes treated?
Typically, you’ll need to monitor your blood glucose levels several times a day and take insulin in order to keep blood sugar levels from getting too high. There are different types of insulin, from rapid-acting to long-acting. The type you take will depend on several factors, including how quickly your body absorbs insulin and lifestyle habits.
We recently discussed the top 10 concerns related to a new diagnosis of type 1 diabetes. Following these concerns, families then often talk about the “honeymoon” period. What is the honeymoon period? Most kids/teens/adults with new onset type 1 diabe...